Page 15 - Mobility Management, January/February 2022

the head arrays will just put their heads to one side and spin. And 99 percent of the time, you can watch their face, and there’s a change in affect, and you can tell they know they’re doing something.”
Racing Against the Developmental Clock
Rosen said her criteria for justifying a pediatric wheelchair is simple: “My two rules for writing for a chair — not for trying the chair, but writing for the chair — is I need to understand that you have some sense of cause and effect, and I’ve got a consistent point of access. So if I think you’re going to be a joystick driver, you’re always going to be able to use that joystick. I’ve had some kids who could drive a head array, but they could only drive it for 10 minutes, and then their necks got too tired. Then you’re not ready yet: We need to send you off for neck strengthening.”
Rosen keeps her clinic stocked with manual and power chairs plus alternative driving controls, so she can quickly try different systems. So when does she want to assess a child? At what age?
“I see some very, very young kids who are very involved and are going to get medical strollers at around 6 months, kids with [cerebral palsy] on vents and trachs who need something to carry all their equipment,” she said. “But 8 months is when I like to start playing with things. That’s when I’d like to start. That’s not
always when I get them. But if you’re 8 months old and you look like you have some cognition, I’m going to try something.
“Just on the fly, I can say, ‘Let’s try this power chair.’ I have
an Explorer Mini [an early-intervention power device from Permobil] in my office as well, so I have things I can put kids into and try.”
Rosen said she wants to reach young children early not just to maximize their potential, but also because their developmental clocks are ticking. “The kids with [spinal muscular atrophy] that we know are not going to be functional ambulators, I want them in [clinic] yesterday, whatever age they are,” she said. “They’re cognitively normal, so I want to encourage mobility as much
as possible, right then, and encourage independence. There’s nothing worse than a kid who is cognitively intact who has not had independent mobility at, like, 5 [years].”
For children like that, learned helplessness — the acquired belief that you have no control over your life, and the passivity that follows — is common. “I tell families that the literature I know of says 4 years of age is your cutoff [for learned helpless- ness],” Rosen said. “The issues with learned helplessness are not just ‘Come here, do this for me’ — especially for these kids who are cognitively intact and are going to have a fairly long lifespan, with all the SMA drugs and the muscular dystrophy drugs that
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